You have heard the words that nobody should hear — “you have cancer.” Your heart races, your mind goes numb and the bottom drops out of your stomach. If you could, you would run outside screaming, “oh, s***. It is not fair! I do not deserve this!” The quiet in your mind is deafening. You are lost, alone and terrified. It seems like the end.
“Life isn’t about waiting for the storm to pass… it is about learning to dance in the rain.”
In fact, this is the beginning of your journey through cancer survivorship: the road less traveled. It is the journey that you can and must make, but it is a journey without road maps or signposts. It is a journey that is uniquely yours and different from all others. It will be challenging physically and emotionally, and you may have some missteps along the way.
How can you start a journey when you do not know where it will end?
Start with a single step.
This section on cancer diagnosis will anticipate some of your needs and questions. Let’s face it, high school biology was more than a few years ago. You may not know what cancer is or what it can do. You may not even know how to tell someone your diagnosis and the test. What are you going to have to endure?
We have been through this before — many times. We can help.
Normal cells act like good neighbors. They stay within the confines of their property. They do not stray outside their areas. They do not interfere with the functioning of those around them. Cancer cells are the polar opposite. They do not stay within their confines and begin to stray and push out the normal unassuming neighbors. This is what we call invasion. Not only do cancer cells develop an ability to grow irrepressibly and escape their boundaries, but they significantly impair neighboring healthy cells. They can compress nearby normal tissues causing those tissues to malfunction. We see this malfunction in a number of different ways. If the cancer is growing in a bone, we see a higher risk of fracture. If it is growing in nerves, we see nerve pain. If it is growing in lungs, we see people having difficulty breathing. If it is growing under the skin or in lymph nodes close to the skin, we see or feel lumps or bumps.
Also like an unruly neighbor, cancer cells not only push against those cells nearby, but they can actually escape their boundaries and begin to spread into other areas. When cancer cells spread to other areas, we call it metastasis. Once these metastases spread, they begin to grow unchecked like the original cancer cell population creating tumors in other areas. Cancer cells can spread or metastasize in several different ways. They can spread through the bloodstream called hematogenous metastasis. This usually spreads to the lungs and/or the liver damaging those organs. Cancer cells can also move through the lymphatic system spreading to local lymph nodes causing lumps and bumps and what we commonly think of as swollen glands in the neck or the groin. Cancer cells can also spread by what is thought to be exfoliation where little tumors break off and float to other areas within the abdomen.
Once a cancer is identified, the goal of oncology is to control the cancer cells and minimize the damage to local structures so that the rest of the body can function normally for as long as possible. Cancer treatments can be varied. We often use surgery, chemotherapy, radiation, biological agents and hormonal agents to help to control these cancers. Some people prefer not to treat the actual cancer but only treat the symptoms which can be controlled. This we call palliative therapy. Many cancers can be completely eradicated; and it is the goal of your treatment group, in conjunction with you and your loved ones, to find the most appropriate therapy for your cancer.
We may be born with the gene abnormalities or they can develop over time. Some families seem to have a large number of cancers in them. Those cancers seem to be of similar types and occur in younger family members. This is what we call a familial cancer and is likely the result of a gene abnormality that is passed along from parent to child. Today, we are able to identify many of these gene abnormalities through a simple blood test and, once identified, we can take steps to prevent cancer.
Approximately 90% of cancers are what we call sporadic. These cancers occur as an accumulation of gene abnormalities over our lifetimes. Many agents, such as chemicals, sunlight, viruses and radiation can damage the genes and lead to cancer. While most people know that smoking is associated with lung cancers caused by breathing in the cancer-causing chemicals in cigarettes, many are surprised to find that cigarette smoking is also associated with cancers of the cervix, skin cancers of the vulva and vagina, kidney cancer and bladder cancer. This is because chemicals, including cancer-causing chemicals, are naturally broken down by the body and pass through the urinary system. Since the urinary system tends to accumulate these toxic chemicals, cancers can develop in these organs. Even simple things such as exposure to sunlight can produce skin cancers.
Even though we know that exposure to known carcinogens such as radiation, chemicals, viruses and other agents cause DNA changes, we still find it difficult to nail down a direct cause of any cancer. This is likely because the disease that we call cancer is a genetic disease involving different genes, AND these genes have a tendency to be affected by different cancer-causing agents. Even though we can predict the changes in abnormal genes associated with each cancer, no two cancers are exactly alike. Even cancer cells within the same individual vary from tumor to tumor showing us that cancers can change within the same individual over time.
This genetic instability or the ability of cancers to change over time presents the biggest challenge to treating patients with cancer. Treatments used in the past sometimes become gradually less effective as the cancer learns ways to adapt and change. Recent research has focused on identifying the exact gene abnormalities in each individual cancer. Once those abnormalities are identified, specific drug molecules can be developed that only target those abnormalities—leaving everything else alone. These targeted biological treatments get to the heart of the basic disease of cancers. The long-term hope for the future treatment of cancer patients is based on development of these new molecules and a new understanding of cancer development pathways.
These environmental agents can be as simple as sunlight or a viral infection such as human papilloma virus (commonly seen in warts) or Epstein-Barr virus (commonly seen in mononucleosis). Use of chemotherapy to treat one cancer can sometimes, but rarely, create a new cancer because of the toxic nature of the chemotherapy agents. Radiation exposure in the form of sunlight, nuclear weapons, nuclear power plant wastes or therapeutic radiation can also cause cancers. Exposure to toxic chemicals in cigarette smoke and exposure to numerous chemicals in the environment can also lead to cancer.
It seems likely that a combination of all of these events, taking place over a lifetime, are required to produce your cancer. Most cancers develop later in life as a result of an accumulation of these genetic events.
Dietary deficiencies in minerals and vitamins and immune system problems have also been associated with the occurrence of cancers. Treatment with medications such as steroids that reduce the immune system has also been associated with the development of cancers.
Your cancer is likely the result of a number of genetic changes that have occurred throughout your lifetime. These genetic changes have finally led to the uncontrolled growth of cells and development of tumors which we call cancer.
Being mammals, our bodies have learned to adapt to the environment. Not only did we adapt physically, but we have also learned to adapt biochemically. This means that our genes, which we typically think of as stable and unchangeable, are actually very flexible. This flexibility has allowed us to adapt to the world around us and has many advantages. It creates characteristics in us that are required to live our everyday lives. The downside of this flexibility is that not only can genes change for the good, but also they can change for the bad. When the genes change in a bad way, this can lead to uncontrolled cell growth and the beginning of cancers.
Cancer cannot define who you are. Your life to-date probably has been defined by a number of important events. Your upbringing is likely the most important contributor to who you are today and how you view the world. Whether you view life as a safe, happy and curious adventure where you can find good in almost everything or whether you loathe getting up in the morning to do the same old thing over and over again or like most of us—somewhere in between, this will not change. Your prior education, formal and informal, your coping strategies, how you celebrate milestones and how you deal with loss will not change. You are defined by all the events that have come before and made you the person you are today. Your diagnosis of cancer will add to that. Life experiences may somewhat change how you approach your life, but cancer cannot define who you.
Cancer cannot take away hope. Although cancer is a time of high stress, anxiety, depression and changes in our spiritual and interpersonal lives, it is hope and only hope that can drive us toward a time when our lives will be more settled, fulfilling, and happy. Cancer simply cannot take this away. Surprisingly, I found that cancer can magnify this hope; and in the times of our greatest darkness, hope becomes stronger and leads us toward a better day.
Cancer cannot take away love. It is interesting that times of crisis often bring unanticipated rewards. Like most others, you’ve probably spent your life doing what is right, pitching in when needed and supporting others who are going through difficult times. Those loving acts will likely be returned to you a thousand fold. I’m sure that the number of cards on your table, the flowers that you have received and the wishes of good health and good luck have been countless and sometimes surprising.
It is at times like this when you realize how deeply and strongly people support you and how loved you actually are. Allow that love to help you through your illness. Accept expressions of love such as meals, help with chores, errands and with the many needs that you will have during this time. It is their time to express their love for you. Allow them to do it. This is their journey too.
First and foremost, cancer will change everything. All that we have held near and dear to our lives, our sense of selves, our sense of family, relationships with friends, spirituality, safety, sexuality, financial security and how we age will change. Almost everyone’s initial thought is, “What will life be like for my friends and family after I am gone?”. This seems to be the first step in most patients evaluation of their cancer. Like it or not, we all face our own mortality when dealing with cancer. Surprisingly though, less than half of those patients who are diagnosed with cancer will actually die from their disease. Nonetheless, evaluating the value of our own lives is an important exercise to help put things in better perspective.
Life has always been short and fragile. Nothing brings that closer to home than the diagnosis of cancer. As we look at our lives critically, we begin to reevaluate and re-prioritize the importance of everything. We begin to look at whether our lives are full and meaningful. We begin to evaluate whether we are good or wicked. We begin to see time pass quickly and realize that there are a number of things that we still need to do with our lives. This sense of mortality and finality many times taints how we view the rest of our lives. This can be a positive or a negative thing.
In the negative sense, I have seen patients view cancer as a scourge that has robbed them of life. They begin to view every day as a countdown to their death. They lose themselves in fear, anger and hopelessness. They choose to lash out against those around them; and with the diagnosis of cancer, they lose the things that were once very important and essential to their lives. Whether they live only 1 more year or another 100 years, they have given into their disease and chosen to live hopeless and futile lives.
On the other hand, I have seen many people choose to view their cancers as a blessing in their lives which has allowed them to re-prioritize what is important. Their sense of mortality has allowed them to quickly identify what is really important and to spend the rest of their loves working to accomplish their clarified goals. I have seen the love expressed by these individuals returned countless times over, and I have seen inspired accomplishments in the writing of books, creating art, starting companies, reuniting with lost or estranged love ones—all fulfilled goals to make their lives better. Whether you choose to view cancer as a scourge or a blessing or both, it is certainly a choice and the choice that you will carry with you throughout the remainder of your lifetime.
When diagnosed with cancer, people begin to look at the physical manifestation of their disease. Most people will notice some changes in their bodies as a result of their cancer or treatment. Cancers can cause pain and nausea. Fortunately, there are a number of medications and ways to give those medications that can minimize these symptoms and improve the quality of life. Cancer can cause loss of the function of limbs, senses and internal organs. However, there are a number of medical devices that can help people adapt to these changes. Cancer treatments can cause pain as a result of surgery, nausea as a result of chemotherapy, hair loss, and skin changes as a result of radiation or chemotherapy. These changes are most often temporary and can be controlled with medications, holistic approaches and relaxation techniques. I find these physical changes are most worrisome to patients, but often are most easy to control from a medical standpoint.
As you go through cancer diagnosis and treatment, it is very important for you to develop a relationship with your cancer care providers so that you feel comfortable in relaying which symptoms are most problematic for you. In my many years of treating cancer patients, I have found that it is not uncommon for them to try to protect me by downplaying their symptoms and not telling me exactly how they are really feeling physically and emotionally. Since I can only attempt to treat what I know about, it is important for my patients to be open and honest about the difficulties they are having with their cancer and treatments so that I can help to mange those symptoms.
The most difficult symptoms of cancer to manage seem to be the non-medical ones. Patients often describe feeling less safe and secure in their lives. They often note that their spirituality is changed. Relationships with close friends and family have changed. These changes are as important to address as the physical manifestations of their disease.
Fear. I do not think that anything causes as much fear as learning you have cancer. There are so many fears that are manifested as a result of a cancer diagnosis, but they are difficult to mention in a short paragraph. Fear of death, fear of treatment, fear of loss of control and fear of what is to be are common in everyone who develops cancer. These fears are often times overwhelming when someone is first diagnosed with cancer. The manifestations of fear include inability to make decisions, depression, anxiety, anger — all of which can impact negatively on those around us — and are the actual treatment of the disease. There are a number of ways to help control this fear. Education is extremely important. Finding out as much as you can about your disease, its treatments and what you can expect many times allay a lot of fear. Our minds are terribly powerful and often times can imagine things way worse than what actually happens. A great way to educate yourself and your disease is to link up with someone with a similar cancer. Your healthcare provider may be able to do this for you. Local support groups in our community through your physician’s office may be helpful. Counseling is often times helpful. Many patients fail to utilize this as they see it as a sign of weakness. There is nothing weak about treating your mind as you treat your body. There are many experts who are well versed in helping patients through the emotional hurdles of developing cancer and the emotional hurdles of its treatment. There are few other times in our lives when we have such a tremendous amount of change and fear as with a new diagnosis of cancer. Healthcare professionals have spent many years training to help people through these times. Focused meditation, relaxation techniques, calming times are also helpful in controlling fears. Some patients’ fear and anxiety is debilitating enough to require treatment with anti-depressants or anti-anxiety medications. These are usually temporary and most needed in patients who had prior history of depression or anxiety disorders. If you need them, use them. They are there as an adjunct to help in your cancer treatment. They can help you get better.
Cancers will cause changes in relationships. Even long-term relationships which seem to be solid and resolute often times change with a cancer diagnosis. At this time of great stress, interactions between those with cancer and their loved ones can be misinterpreted and result in stress within the relationship. For instance, for someone who is diagnosed with cancer, maintaining independence may be a very important part of their recovery. Those around them may wish to help with simple tasks so that the person with cancer can focus on their recovery. Actions as simple as washing the dishes, helping with housework, helping with chores may be seen by someone with cancer as intrusion into their space. This interaction, which was meant to be helpful, may result in arguments between individuals and a sense of loss for the patient with cancer. It is important during this time to communicate these feelings. I have always said that an individual is not diagnosed with cancer alone. It is the individual’s family and entire support network which changes. I have seen in the past close friends and family flee when a loved one is diagnosed with cancer. This is simply because they do not know what to say or do and feel that they can only make the situation worse. It is incumbent on everyone to know that they can only help to improve the situation. If they say something unintentional which is perceived as hurtful, that can be worked out. If they do not say anything at all, a sense of abandonment can often at times be much greater. It seems to me that over time these relationships begin to normalize as the initial shock, fear and anger of a cancer diagnosis abet, and a sense of wholeness returns.
Spirituality also changes after cancer diagnosis. I have seen in my own family those who have been extremely religious begin to question whether God was on their side or against them during this difficult time. I have seen others accept willingly that this was God’s fate for them and he will get them through. There is great variation in people’s religious beliefs and an additionally greater variation on how these beliefs change or adapt at the time of cancer diagnosis. Those people who already attend religious services often times find comfort in discussing their spirituality with their church leaders. Those who have not been participating in religious worship may wish to explore this spirituality within their lives. This can be done through family and friends attending worship services and discussing their spirituality with independent chaplains or religious leaders in their community.
Isolation is a common response to a cancer diagnosis. There are few other times that we feel so very alone than after the diagnosis of a cancer. It is our disease, affecting our body, intruding on our lives and no one can fully understand that besides ourselves. This loneliness and isolation can rob us from important positive interactions of those around us, close family and friends. This isolation usually resolves by itself, however, can be a sign of a deep depression or an anxiety disorder and may require treatment.
Finally, cancer can present a positive change in our lives. Cancer can re-prioritize and re-energize our experiences for the better. A diagnosis of cancer can really define what is important to us and what our life’s long-term goals are and energize us toward completing those goals. Whether those goals are teaching children to read, singing in the church choir, reuniting with an estranged loved one or starting a brand new business, I have seen cancer diagnosis result in all of these goals. Use this time in your life to reflect at who you are and what you would like to do. Let your diagnosis energize and reinvigorate your life to accomplish these goals. Let the little corks in irritation go by and enjoy every special moment as small as it may be.
Once you have been told, “Yes, you have cancer”, you will likely experience a host of other emotions: you may feel shock and disbelief or anger that this is happening to you. You will likely struggle with a multitude of questions like: “How will I get through this?”; “Will I die?”; “Will I be able to work?”; “Who can I count on to help me?”; “What will happen to my family?”; as well as many other questions.
It is normal to feel overwhelmed by the decisions that have to be made, and you worry about fully understanding the medical language and the treatment options that you are asked to consider. A cancer diagnosis has sometimes been described as waking up in a foreign country without a road map or knowing the language.
Be assured that it is normal to feel overwhelmed, scared, angry and confused over what to do in a situation like this. This kind of emotional turmoil may last several days or in some cases, a week or two. It is also very important that you share these emotions with your doctors and with your family. They can help, but only if you share your concerns with them. This is not the time to hold in your emotions; this is the time to share your feelings. Cancer is a family disease. It affects not only the patient, but also your loved ones. Your doctor will tell you that your emotions are NORMAL and that there are tools and skills you can learn that will help you get through your cancer journey.
As a woman, you function in many different roles: you may be a wife and mother, often a sister and a daughter, a friend, coworker and neighbor. As a woman, you nurture others. You reach out and help those you care for and many depend on you. When you learn that you have cancer, you need to make a shift and begin to focus on caring and nurturing yourself and to reach out for help from those who are important in your life. They want to help…but often they wait for you to tell them how to help you! Be specific about your needs – that will make it much easier for others to help you!
The women who have gone before you will tell you how important it is to take charge of your treatment and care, to learn to speak that new language of “medicaleese”, and to empower yourself and be assertive. Remember, it’s your body and your life. You need to look at yourself as an active participant in decisions about your treatment plan.
When your treatment plan has been decided and you are comfortable with the decisions, you will notice that your initial strong emotions usually begin to subside. You will start to feel more confident and hopeful. Now, you can focus more attention on those other areas of importance: care of your physical body and your spiritual needs which will strengthen and sustain your mind and soul. There are many avenues to explore and you will decide which will be most beneficial for you.
Some of you will draw on the strengths you had prior to your cancer diagnosis and others will look in new directions for the tools and skills which will carry and nurture you through your cancer journey and beyond.